Connective Issues Spring 2023

The 14 th Annual HeartWorks St. Louis gala on March 11 was one to remember! The night was filled with awards, stories, celebration, and, most importantly, generosity. Thanks to the leadership of co-hosts Dr. Alan and Rebecca Braverman, the event raised more than $350,000 for the Foundation’s programs and services. Over 300 guests, including prominent members of the medical and business communities, as well as the Marfan, Loeys-Dietz, and VEDS communities and their loved ones, came together to celebrate this incredible cause. The night featured moving stories and heartwarming speeches as we honored some truly A highlight of the night was honoring Reed Pyeritz, MD, PhD, an international authority on the genetics of cardiovascular disorders, with this year’s Lifetime Achievement Award. For over 40 years, Dr. Pyeritz has dedicated his life to improving the diagnosis and treatment of cardiovascular syndromes. His groundbreaking research on Marfan syndrome has paved the way for countless patients to receive better medical care, and he was instrumental in the creation of The Marfan Foundation as we know it today. We also had the pleasure of recognizing Sanjeev Bhalla, MD, a Professor of Radiology and Chief of Cardiothoracic Imaging at Mallinckrodt Institute of Radiology (MIR) at Washington University School of Medicine in St. Louis, with the Hero with a Heart Award. He has won multiple teaching awards, and in 2015, he was named Vice Chair for Education, where he helps oversee MIR’s programs for medical students, trainees, and alumni. We can’t thank everyone enough for their support and generosity! To view all upcoming events, visit the calendar at Marfan.org . HeartWorks St. Louis remarkable individuals. Award Recipients

 Dr. Sanjeev Bhalla was presented with the Hero with a Heart Award (with Dr. Alan and Rebecca Braverman).

 Dr. Braverman presented Dr. Reed Pyeritz with the

Foundation’s Lifetime Achievement Award.

Meet Ryan Director of The VEDS Movement

The Foundation is excited to announce Ryan Rodarmer, MS, is the new Director of The VEDS Movement. Ryan, from Grand Rapids, Michigan, has a BS Degree in Biology and a Masters in Genetic Counseling. He is also a survivor of a type A aortic dissection due to hereditary thoracic aortic disease. Ryan has educated, advocated for, and comforted many families a ff ected by VEDS, among other genetic aortic and vascular conditions. He has also assembled healthcare teams to prepare for medical emergencies. “As a genetic counselor and type A aortic dissection survivor, the thrill is indescribable when you can look back and see how every opportunity, every connection, and every experience (including those challenges that life has unexpectedly thrown at you) has so clearly led you to a role where every ounce of that experience can be harnessed to make a meaningful impact,” said Ryan. “I’d like to recognize and thank Katie Wright for the unbelievable work she has done in launching The VEDS Movement and for her commitment to improving the lives of a community that means so much to me.”

Ryan was with Spectrum Health in Grand Rapids for 16 years where he provided comprehensive genetic counseling services both

in-person and virtually across cardiology, oncology, and pediatric specialties with a focus on cardiovascular genetics as lead cardiac counselor for 16 years. Most recently, Ryan worked with The SADS Foundation as a project manager to increase the uptake of cardiogenomic testing for SADS. The SADS Foundation supports patients and families who are dealing with genetic conditions that cause sudden cardiac death. A volunteer Director of Genetic Education for Aortic Hope, Ryan develops educational material and psychosocial support via online, print, and social media content. Ryan is also an advisor to Think Tank Aorta’s leading edge #ChatAortaAI project and has extensive experience in social media, website design, and content creation.

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Spring 2023